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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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  1. Chickadee9

    Behind the scenes: Setting up the UK CFS/ME Research Collaborative (UK CMRC) - Tymes Trust

    I was wrong to use the phrase "anti-CMRC clique", for which I apologise. It was done in the heat of the moment. I fully accept that people on here have valid concerns. What I felt strongly about was the way this thread started. It was clearly intended as spoiling tactic ahead of the CMRC...
  2. Chickadee9

    Behind the scenes: Setting up the UK CFS/ME Research Collaborative (UK CMRC) - Tymes Trust

    I think there has been much constructive discussion on this thread. But think of what started it and its title. Someone posting about a bunch of emails they couldn't reveal or validate in any way, just before the conference started. Coincidence? I think not. That's what I was satirising---not...
  3. Chickadee9

    Behind the scenes: Setting up the UK CFS/ME Research Collaborative (UK CMRC) - Tymes Trust

    Yes it is. Next time I'll insert a disclaimer...I hadn't realised it was necessary.
  4. Chickadee9

    Behind the scenes: Setting up the UK CFS/ME Research Collaborative (UK CMRC) - Tymes Trust

    Point taken. It is intended to satirise this thread - not the points made in it - which was initiated by a post, followed by another post, not too far from what I've posted.
  5. Chickadee9

    Behind the scenes: Setting up the UK CFS/ME Research Collaborative (UK CMRC) - Tymes Trust

    Dear forum members I need to draw your attention to a cache of emails that has just been sent to me by someone calling her/himself “conspiracy theorist number 1” revealing a close connection between Professor Lipkin and the psychiatric world---a connection that, if known before this week, would...
  6. Chickadee9

    Behind the scenes: Setting up the UK CFS/ME Research Collaborative (UK CMRC) - Tymes Trust

    Here we go again. Yet another attempt by the "anti-CMRC clique however much biomedical research they encourage" to denigrate what was, by all accounts, a most successful gathering of biomedical researchers to discuss ME. You sound as if you are grasping at straws in your desperation to blacken...
  7. Chickadee9

    Behind the scenes: Setting up the UK CFS/ME Research Collaborative (UK CMRC) - Tymes Trust

    Your argument is absurd. De facto he was invited by the Collaborative. Does it matter anyway? The important thing is that he's here. Sounds to me from what others have posted that Peter White barely had time to state his name in 2 full days of conference. Does the fact he was there invalidate...
  8. Chickadee9

    Behind the scenes: Setting up the UK CFS/ME Research Collaborative (UK CMRC) - Tymes Trust

    This is hair-splitting. The MEA is a fully paid-up member of the Collaborative. It is misrepresentation to say the "patient community" brought him over, completely neglecting to mention Dr Shepherd and his role. Anyway, does it matter how he got here? He did. And he has spoken. And he is...
  9. Chickadee9

    Behind the scenes: Setting up the UK CFS/ME Research Collaborative (UK CMRC) - Tymes Trust

    This is a misrepresentation of the facts. It had everything to do with the Collaborative. If you look at what is online and in the public domain my take is that you can clearly see the initiative came from Dr. Charles Shepherd of the MEA. The MEA is part of the CMRC. He organised it and raised...
  10. Chickadee9

    Christmas appeal for UK ME Biobank at the Royal Free Hospital, London

    This is a crucial initiative for PWME. Biobanks are already identifying associated genes for other diseases such as autism. I find it difficult to understand why a few people on here persist in opposing any scientific initiative that will help PWME just because there is the merest possibility...
  11. Chickadee9

    Invite to Action for M.E.’s Severe M.E. Symposium & AGM, 14 Nov

    Why should it be? The NICE guidelines make it clear that CBT and GET are not appropriate for the severely affected. Anyway, as the clinics have hardly any domiciliary services, how on earth are the severely affected supposed to get there? Moderately affected people can find that getting to the...
  12. Chickadee9

    Dr Ian Lipkin's $1.27m gut microbiome study - crowdfunding campaign - news and updates

    I also got a letter after my donation. It does seem a waste of money. I hadn't realised there was box you could tick, not that makes any difference it seems.
  13. Chickadee9

    STATEMENT FROM THE 25% ME GROUP REGARDING THE CFS/ME RESEARCH COLLABORATIVE CHARTER (CMRC) MAY 2013

    I never mentioned anything about a ban. People usually put things up here because they think they are significant and others should be aware of them. As I said originally, I was curious that something so old was reposted. That often means there has been some development so I wondered what it...
  14. Chickadee9

    STATEMENT FROM THE 25% ME GROUP REGARDING THE CFS/ME RESEARCH COLLABORATIVE CHARTER (CMRC) MAY 2013

    This has certainly been an interesting thread with a lot of good points made. Just let me come back to 2 of them. I still worry that the desire to work with a better definition - which we all agree is an important objective - will slow down/delay/prevent important research if, as I think some...
  15. Chickadee9

    10 Celebrities with ME/CFS - by Erica Verrillo

    Have a look at Health Rising. They send out a daily email. It was in one of these in the last week or two. Cort Johnson interviewed her.
  16. Chickadee9

    STATEMENT FROM THE 25% ME GROUP REGARDING THE CFS/ME RESEARCH COLLABORATIVE CHARTER (CMRC) MAY 2013

    I was simply trying to understand your point of view. I understand your despair and anger and frustration. We have been neglected for too long. You have every right to feel that way given the way the psychs have dominated the field for so long. But I see them in retreat now...thank goodness...
  17. Chickadee9

    STATEMENT FROM THE 25% ME GROUP REGARDING THE CFS/ME RESEARCH COLLABORATIVE CHARTER (CMRC) MAY 2013

    I would like to know how doctors tell whether a person has ME or CFS? Do you know of any ME specialist who will make such a distinction when they are diagnosing? Is the Canadian definition adequate do you think? I agree many are misdiagnosed with other things.
  18. Chickadee9

    STATEMENT FROM THE 25% ME GROUP REGARDING THE CFS/ME RESEARCH COLLABORATIVE CHARTER (CMRC) MAY 2013

    Min, thinking about this a bit more I see where you're coming from but I worry that we could spend a lot of time and effort trying to ensure that researchers only look at people with "pure" ME and miss the big picture, which is alleviating the suffering of people with ME ASAP. Isn't it as likely...
  19. Chickadee9

    STATEMENT FROM THE 25% ME GROUP REGARDING THE CFS/ME RESEARCH COLLABORATIVE CHARTER (CMRC) MAY 2013

    Just curious to know why you are reposting this now. Has something new happened?
  20. Chickadee9

    10 Celebrities with ME/CFS - by Erica Verrillo

    All I was saying was that, for SOME people, the ability to rest and not having the worries of work and money and daily living in the early stages of ME would, I believe, have helped them improve and possibly recover. As Bob says we are all different. I think research will find that there are...
  21. Chickadee9

    10 Celebrities with ME/CFS - by Erica Verrillo

    I too nearly recovered after a few months and then felt I must work to keep my job---and dug myself a deeper hole. That's how it seems in retrospect anyway.
  22. Chickadee9

    10 Celebrities with ME/CFS - by Erica Verrillo

    As I said it's not a guarantee but you obviously agree with me it improves your chances in the early stages if you have supportive environment...assuming you get the right advice in the first place!
  23. Chickadee9

    10 Celebrities with ME/CFS - by Erica Verrillo

    I agree many celebs probably don't have ME. And if they do it's career suicide if they announce it.
  24. Chickadee9

    10 Celebrities with ME/CFS - by Erica Verrillo

    Yes I do but, of course, it won't apply to everyone. I think one of the reasons people stay ill is that they have to cope with the stresses and strains of daily living. It's hard to rest enough and turn your mind off when you have to shop and cook and pay the bills and there's little money...
  25. Chickadee9

    10 Celebrities with ME/CFS - by Erica Verrillo

    I think he may well have had ME but retreated to his estate in NZ and did nothing for a long time. A lot of us would recover/improve if we could do nothing in beautiful surrounds with everything done for us for as long as needed. So he was lucky he was able to do the right thing.
  26. Chickadee9

    AfME: Discussions with CFS Research Foundation

    Don't understand your question Peggy Sue? They obviously think this project is a good idea otherwise why would they have contributed in the first place? We may find it amazing that they backed this project, given there are lots of other good projects they could have supported, but the fact is...
  27. Chickadee9

    AfME: Discussions with CFS Research Foundation

    The problem I have with this is that maybe some stopped giving money to CFSRF when the project was announced but there must have been many - the majority - who continued to donate to raise the amazing sum of £230,000. Probably because CFSRF had a good record of supporting biomedical research...
  28. Chickadee9

    Daily Telegraph: 'If an ME sufferer looks fine, the school assumes they are'

    I think if you do some digging there have been contributions to ME research in the past. Pity they don't seem to be active now.
  29. Chickadee9

    Daily Telegraph: 'If an ME sufferer looks fine, the school assumes they are'

    I don't know whether people on here are aware that the younger of the 2 brothers who own the DT has had ME for many years. Whether this has anything to do with their coverage I've no idea. Just an interesting fact I picked up from a search. Others on here may know more.
  30. Chickadee9

    See the Shocking Moment She Went From Crippled and Bed-Ridden to Dancing in Worship

    If it works for you that's fine. You have obviously found a regime that works, even though it takes a lot of discipline. But not everyone can do this. I'm signing off this conversation now. I wish you well and sincerely hope you find a way to better health. ME is such a devastating illness. We...